Countdown to Surgery

Haley's surgery has been scheduled for April 14th. She is disappointed that the wait is so long, and I have tried to encourage her, telling her that the time will fly by. Her physical condition has improved, as her fainting has decreased dramatically. But her pain has gotten worse. We are not sure why, but she hurts throughout her entire body (head, neck, legs and back) and at times she can hardly endure the pain. In fact, sometimes when she cries, her breathing gets fast and shallow and it causes her to faint. (So discouraging...) I feel so sorry for her.

Tonight I decided to make her a tangible device to count down the 35 days until her surgery. I made a wreath with 35 Lindt truffles on it plus a pair of scissors so she can snip one off each day and have a sweet treat. When the truffles are gone, it's time to leave for Maryland. Here is a picture of it:

Some details: She will be having tethered cord surgery. Dr. Henderson will "untether" her spinal cord from the fibrous connective tissue that holds it in place. This tissue is extra fibrous in EDS patients and the surgery sounds pretty tedious, but Dr. H has done hundreds. He believes that her pain and bladder issues are due to the tethered cord. Also, she has weakness and decreased sensation in her legs. From what I've read, most people who have had this surgery have experienced a tremendous amount of relief right away. Dr. H says the relief can continue for up to a year. This is very hopeful news. Haley has suffered so much for so long.

Won't you pray for her to be able to hang on for these 35 days? And, of course, please pray for the surgery itself. We don't take one of these surgeries for granted. Dr. Henderson is very gifted and has used his gifts to help many people, including Haley. This will be her 4th procedure with him, but we (and he, I'm sure) covet your prayers for him and for all aspects of the surgery. Thanks so much for all of your continued support. We so appreciate it.